Archives For raising a family while living with lupus

A New Season Ahead

July 19, 2014 — Leave a comment

If you haven’t noticed, it’s been pretty quiet around my blog lately. I took about a 6 month break from pretty much all my writing. There was a lot going on and it just seemed like the thing that needed to happen, one less thing to think about in my day. But, only for a season, because I truly do love my writing time… and now I am back!

The Regal Ruby is our take on the classic Cherry Pie

The Regal Ruby is our take on the classic Cherry Pie

The last post that I wrote was about The Year of Pie. Well, many of you probably already know that I have started a company with one of my friends, Viva La Pies. This was all in the beginning stages when I took my writing break. I have wanted to own my own Pie and Coffee shop for about eight years now. It never failed that when we would visit family in a small town in east Texas, Chase and I would find ourselves in the local pie shop dreaming about my future shop. We had talked about the “someday” pie shop for so many years that when we began to get more serious about it, it was kind of surreal. Finally, Chase asked me, “if you didn’t try, would you regret it?” I had no question in my mind what the answer was, yes… I would always wonder what-if. And with that we had our answer. My business partner and I worked for several months perfecting our menu and getting it exactly how we wanted it. Then came time for the Kickstarter, because opening a pie shop can be rather pricey. We ran a month-long Kickstarter and unfortunately we were not funded. It was definitely a disappointment. But, that has not stopped us. And why should it? Right now, we are operating as a home bakery and are working towards our store front. God can see what is ahead, and for that I am thankful, because he knows the best time for this to happen. Not to mention, we have had a great receiving from our online followers once we started accepting pie orders as a home bakery.

Viva La Pies

Want some pie? Don’t worry, we have plenty!

 

Also during my writing break and in the middle of starting Viva La Pies, I found out that I was pregnant. This was a two-year long wait that we were very excited about! We were so ready to grow our family, and was starting to wonder if that was ever going to happen for us. Not to mention how my Lupus was going to respond. Thankfully Lupus has been so quiet, I can actually say that I don’t even realize I have it right now! Praise the Lord! Like I mentioned above, it was a disappointment when our Kickstarter was not funded, but it definitely made sense with what was going on within our own family, it would not have been easy to open up a store front while pregnant.

Now, I am home after two years of being in the workforce. Those two years taught me so much, and I am thankful for that time along with this new journey ahead. My days fill up fast as I have an amazing three-and-a-half year old who keeps me busy, a couple of days a week I work for one of Chase’s companies, along with marketing and baking pies for Viva, all while being pregnant. It’s busy, but I wouldn’t trade it for anything! I am thoroughly enjoying the blessing we were given that is allowing me to work from home right now.

Sometimes, our timeline looks a little different from God’s timeline, but He always knows what He is doing!

 

Have you ever been at the Zoo where they evacuate due to a loose animal? I have!  A couple of weeks ago was the annual Lupus Walk held at our local Zoo. The day started out like any other. I woke up late, frantically tried to get my family and myself out the door in time for registration by 7:45. When we arrived there was about half our team already there waiting for us. After checking-in and the rest of the team arrived we went inside the Zoo for the opening ceremonies. Everyone huddled in their own groups talking and waiting for the festivities to begin. I was snapping pictures of our team. Then we hear a voice on a megaphone “please move to the right of the Zoo, there is any animal loose.”

My family and friends that joined me, so thankful for them!

My family and friends that joined me, so thankful for them!

No one moved. Honestly, this had to be a joke. There was no way that an animal could be out, roaming around!

“I am not kidding, there is seriously an animal loose in the Zoo! Please exit to your right.” Now are we talking a flamingo or a lion? I mean there is seriously a difference! 

At that we all took what he was saying as fact and there was a sea of people making their way to the nearest exist. Once everyone was out the doors closed and there we were, a large group of Lupus Walkers with no walk to be had. Everyone found their area in front of the Zoo to wait it out. We were told that it wouldn’t be long before everything would be secure and we could enter again.

I guess it's fitting that my dog is a Canis lupus familiaris, aka Siberian Husky!

I guess it’s fitting that my dog is a Canis lupus familiaris, aka Siberian Husky!

During the waiting period we slowly gathered more information. There was not only an animal loose, there were three wolves.

Do you know what the scientific name for a wolf is? Canis Lupus.

Now that is priceless! They just wanted to take part in the walk just like everyone else, I mean it’s practically like they are the Lupus mascot.

Daniel Orton from the OKC Thunder

Daniel Orton from the OKC Thunder

As we continued to hang around I was able to meet an OKC Thunder player, Daniel Orton. He was joining the walk in honor of his mom who lost the battle to Lupus in her early fifties. He shared his story on the website and it was so neat seeing him and his family there joining us as we all fight the illness. That is one of the amazing things about these events, we may not know each other, but we have a connection. As we walked I was able to talk to other people with Lupus and hear their story, share mine. We all have a different battle to face, yet we understand what the other is facing at the same time, we support one another!

So back to our mascots roaming the Zoo- apparently there was flooding from the storm the night before which caused them to be able to get out of their habitat. About two hours went by before all three were caught and the Zoo was secure. By this point everyone was ready to get the walk started. They opened the gates and we moved in. There was some confusion because we were not sure if there was going to be the opening ceremonies or not, they never actually had them. I’m not sure if there was any set plan but everyone headed for the course and the walk had begun.

I feel pretty confident to say that there has probably never been a walk quite like this before, and probably never will!

 

I Am Not Lupus

February 25, 2013 — Leave a comment

In a little over a month it will be a year since I was diagnosed. To receive a diagnosis that changes everything is tough. You never know how you will take that kind of news until you are faced with it. It can be so easy to sink into depression, searching for the answers to questions that run a continual loop in your thoughts… why me? Why am I sick? What will the future hold? It’s also difficult to process because not everyone will understand what you are going through, because you might not look sick. But we can not stay in this place! When we stay there it can be a long and bumpy road ahead. I believe that my God is with me each and every day. He is there on good days and my horribly flared up days. I have no doubt that my going through this diagnosis and now living with Lupus is teaching me things I would not have learned otherwise.

Snow Day

There is so much more to me than just my Lupus.

But, we all have bad days and sometimes we just need a little reminder… some inspiration to keep us going. The truth is I don’t want this blog to be a constant story about the woes of my disease. Sure there will be posts about some rough flare ups, that’s just part of it. The point is I have Lupus but, I am not Lupus. There is so much more to me than that. I am a wife to the most amazing man who I am blessed to say was my high school sweetheart. I am a mom to an adorable little boy. I am a writer. I get so passionate about writing my thoughts, creating make believe in my novel I am writing, and sharing and expressing myself as a writer. I look at my disease as only giving me more perspective, not just my sole purpose of writing. Lupus is something that affects me every day. Even when I am feeling good I still have things that just come with having a disease to deal with that no one else has to worry about. It will always be a part of who I am. But it doesn’t have to be my identity. I don’t have to be strictly Lupus.

After several months of processing through my diagnosis I decided to take this blog in a different direction. I had been writing this blog for a while but felt it was time to for a change. For me Raising Inspiration is about my life, my journey and my disease. I want to spread a little awareness and some inspiration. My hope is that someone who is having a bad flare up will stumble across here and see that tomorrow is a new day. Perhaps a little laughter is what they find and it brightens their day, because sometimes laughter really is the best medicine. I don’t know why I got Lupus, I just did. And that’s okay. It’s part of who I am and now I have more to add to my story.

 

 

 

Challenges and Rewards

January 29, 2013 — Leave a comment
The following is a guest post by Ashley Furman. She is a fellow blogger, mommy of two and living with Lupus. I am so thrilled that she has written a post for me and I know that you will enjoy her writing as much as I have. Make sure to head on over to her blog and check it out Oh, my aunt has Lupus.

Being a mom is challenging. I don’t think that statement is a surprise to anyone. Being a mom with Lupus certainly adds to that challenge.

guest blogMy husband and I got pregnant with our second child when our daughter was only 10 months old. If you are unaware, 10 months is right on the difficult cusp of toddlerdom. Let me fill you in, in case you haven’t been there before- this is the time when your sweet little happy baby starts turning into this autonomous being, who refuses to eat and sleep, and goes into full blown panic attacks every time you leave their field of vision for more than 3 seconds. I quickly began seeking advice on what life would be like with 2 kids under 2 years old, and something I was told often was essentially “prepare for a crazy hard first year.” Some people were more encouraging than others, but I was left in a constant limbo between excitement for the beautiful chaos that would take place, and “Oh God. What have we done?”

Being pregnant with an infant-eventually-turned-toddler was definitely hard for me, especially during the weeks that I had my head shoved in a toilet 5+ times per day. And I reflect on those days often when I’m having a particularly difficult time mothering my kids during painful Lupus junk. Feeling so sick while pregnant but knowing you are still responsible for the life that you already brought into this world is a lot like the dilemma you face as a mom with a chronic illness. (I guess when you can compare your pregnancy with a chronic disease, it’s safe to say they’ve been rough…) You’re tired, you don’t feel good, you would give your left middle toe to stay in bed just a little longer. But your kid is crying and you remember, much to your disappointment, that stay-at-home-moms don’t get “sick days.” You have to get up, you have to make breakfast, and you have to find a way to get through the next 12-15 hours before they go back to sleep and you can be longingly reunited with Mr. Sandman. That almost sounds dirty, but it isn’t, I swear. The bottom line is, you don’t have a choice. As a parent, your kids await. And whether you’re sick or not, I’m a firm believer that if you’re doing it right, parenting will be hard. It’s supposed to be. Children are a gift from God, and I believe He uses the challenges that parenting brings to refine us and to draw us closer to Him. I now consider living with Lupus similarly. Having a chronic disease is a constant reminder of my weakness, but it’s one that Jesus is ready to answer with His own strength, drawing me closer to Him. And how thankful am I for that, because sometimes it’s near laughable at the circumstances that I’m functioning under.

My husband is a second year Medical Student. When you account for time he spends in class and time studying, it more often than not adds up to approximately 80 hour work weeks. Because I stay at home with our daughter Makaila, who just turned 2, and our 5 month old son, Cohen, I definitely feel the burden when my husband isn’t available to help during any hour of the day. However, by the grace of God we were given a baby who, unlike his sister, is one of the easiest, happiest babies of all time. However, also unlike his sister, he still wakes up every 2 hours throughout the night. So although I am dealing with Lupus fatigue on top of standard motherhood exhaustion, the ear-to-ear grins from my toothless babe at 2 am help to keep me going.

Beyond sleep deprivation, having a baby and a toddler has naturally come with its own challenges. Possibly the biggest of which with Cohen has been that he has a mild form of plagiocephaly, aka “flat head syndrome.” We were told at his 2 month appointment what was going on, and essentially given doctors orders to NEVER put him down, in hopes it would “correct itself.”Luckily I was already prepared to do my fair share of baby-wearing, so I had a great wrap on hand (because how else do you take care of a newborn and a 19 month old?) but in practice, keeping him off his head and in my arms at all times has been downright exhausting. (Side-note: I would like to say right now that if his head does round out over time, I am fully claiming it as a fruit of MY hard labor, and not giving any credit to his greedy skull bones. Correct itself? Give me a break. Mom did that.)

So really, in perspective, the most difficult part of having Lupus for me is simply trying to keep up with life while having Lupus. Does that make sense? I guess what I mean is, Lupus isn’t the hardest part of my life. Life is the hardest part of my life. For example, last Sunday, Cohen screamed and cried all night long. Literally. All night. Since it was so out of character for him, I took him in to see the Pediatrician first thing the next morning. Come to find out, the poor bugger had a double ear infection. Then the very next day we found out that my daughter somehow contracted hand, foot, and mouth disease, and she was struggling to even drink a glass of milk without screaming in pain. Totally heartbreaking. A few days later it became apparent that my husband had managed to catch the virus from my daughter, and then he too was hardly functioning. So, all week long I had an entire family of sickies to take care of, including two extremely needy, demanding, and frequently crying children, all while working through my own joint pain, headaches, body aches, and fatigue. That’s just a recent example of how Lupus made some standard life circumstances that much harder. And while things may be less taxing during a normal week, honestly my normal is always hard.

I’m one of those moms who makes a big effort to keep my kids engaged in things other than the television (or iPad, iPod, computer, whatever…) My baby boy won’t be allowed screen time for at least another year, and my very spirited (and thus very energy consuming) toddler has her’s kept to a minimum. To keep children occupied, happy and safe while simultaneously trying to shape them into responsible, moral, gospel-centered, educated, and kind individuals, is no easy task. There are days when I’m so tired that my oldest will get permission to watch an extra episode of Yo Gabba Gabba (in which I have to extend grace to myself, as to not feel like I’m failing her. Perhaps silly, but true.) But the meat of the day is spent together putting together activities that foster her creativity and development. And although he’s still a little tot, the same goes for my 5 month old. There are definitely times I think of how much easier my life would be if I could stick both kids in front of the television and zone out for an hour or two, but alas, my convictions always come up stronger than my desire for a morning of inactivity. So while I’m fantasizing of going back to sleep, what actually happens is I gulp down some form of caffeinated beverage, take a horse pill of ibuprofen if I’m feeling extra achey, and I try to remember that it’s only going to be on the Lord’s strength that I can get through the day in any type of meaningful way. And then I take it as it comes. And it can be good, and hard, and exhausting, but it’s all beautiful. And I’m thankful.

For me, having 2 kids under 2 has already proved to be challenging, no doubt. As is being the wife of a Med Student, as is living with an illness like Lupus. But what I expect from challenges is that they also offer us the biggest rewards. My family brings me amazing amounts of joy. Every day, every hour. How could they not? I was given 3 incredible people to love. And although there are a lot of trying times within the dynamics of our relationships, I am beyond blessed by all of it. I really believe that God is also going to use the challenges of my Lupus in a similar way. If I am handing it all over to Him- submitting to Him my head, heart, and hands, including this disease in its entirety- He will lighten my burdens and I will be conformed more to the likeness of Christ. It’s not like He’s going to leave me hanging as if I’m less valuable to Him now that I’m sick. On the contrary, I think the Lord actually has big blessings He wants to bestow on me in the midst of my relationship with Lupus, and that ultimately, He will use this disease in my life to bring glory to Himself. And although it can be difficult, in the end that is the biggest reward I could ever hope for.
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I would be just fine if I didn’t eat another sweet potato until Thanksgiving, I’m just saying.

There are only so many ways that you can make a sweet potato… baked, french fries, hash-browns, and that pretty much sums it up. Think about it, what else can you really do with it (besides making it into a pie). Well the past couple weeks I was fasting by only eating seven different foods and sweet potato was one of my items. Everything was going smoothly and I had no complaints until about four days into the fast. Between the items that I had picked for the month I didn’t really have much option of sugars, besides an apple, as well as the drastic decrease of calorie intake I began to have some issues. My blood sugar dropped and I wasn’t eating enough calories in the day to even get me enough energy. So I made the executive decision to swap some items out for bread and strawberries to meet the needs that my body was lacking. But with all the switching of ingredients the sweet potato stayed. Ugh! I have a love/hate relationship with that vegetable! You see I have always enjoyed a good slice of sweet potato pie, or give me a big scoop topped with marshmallows and brown sugar for Thanksgiving! However, when I am eating them every other day without the delicious marshmallows I began to realize that I just do not care for them as much as I had thought.

I would love to say that this month I used each repetitive meal as an opportunity to be more grateful. I’ll be honest with you, that was not the case. I found myself complaining about my meals- the texture, I am so sick of the mushy texture! It would be so nice to eat something that doesn’t need so much effort to make. UGH, I am so SICK of sweet potatoes! I even found myself wanting to end the fast because I “never” learn from food fasts. All I wanted was to prove this thought so that I could eat something for dinner other than the same thing I had eaten for breakfast and lunch. Then it hit me- WOW, I have a terrible attitude! Within one week God brought it to my attention that I needed to work on my attitude, more specifically He told me to be more positive in my current circumstance. I don’t know about you, but when I hear the same thing from God three different times within a matter of five days I assume it safe to believe that this is a lesson God is really wanting me to learn!

Confession: when I learned that God wanted me to be more positive I still had about a week left of the fast. I tried to reason that since I had learned what God was showing me I was now able to end the fast early.

Not my finest hour.

Then I was humbled by my husbands response. “Maybe you learned the lesson a week early so you could spend the next seven days of the fast implementing the positive attitude.”

Wow!

So that is what I did, I spent the next week eating my fast friendly foods and praying constantly for God to transform my attitude. And He did! I have to say that it was an amazing week, I could actually feel God’s presence as he helped me change the way I thought and how I looked at the rest of my fast. It has even carried over since the fast has ended. Now when I am in a frustrating situation my mind has started looking for the positive.

Truthfully I love this lesson that God gave me because who couldn’t use an extra dose of positive some days!

Photo Credit: Marie Kare